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Recapping Head to the Hill 2017

Guest Author: Steven LaFond & Tom Halkin

They came from 38 states. 308 brain tumor patients, caregivers, and supporters made their way to our nation’s capital to advocate for policies that will benefit the brain tumor community as part of Head to the Hill 2017.

Despite high-profile and contentious debates happening on Capitol Hill, NBTS and our advocate were determined to ensure Congress was also reminded of the critical need to embrace legislation that is vital to brain tumor and cancer patients across America. Specifically, we made two asks (or thanked those who had already supported these policies) in over 220 meetings with congressional offices, to:

  • Support the Childhood Cancer STAR Act.
  • Increase appropriations (funding) for medical research, including brain tumors, through the National Institutes of Health (NIH) – including the National Cancer Institute – and the Department of Defense’s Peer Review Cancer Research Program.

 Before meeting with our elected officials, we held a rigorous training day featuring policy experts, scientists, and guest speakers who provided advocates with the tools necessary to use their personal stories to affect change.

Among the important guests we were privileged to have speak with our advocates, were:

  • Liz Salmi, long-time advocate and former State Lead of California, who paid tribute to the advocates we have lost to this disease.
  • Matt Tifft, NASCAR driver and brain tumor survivor, who thanked people for being in the fight and was here on the hill as an advocate himself.
  • Laurie Richards, president of LR&A, presented a masterful session on how to use your own personal story effectively when asking Congress to support initiatives. Laurie is not only an expert, but a brain tumor advocate herself.
  • Mark Gilbert, MD, the Chief of the Neuro-Oncology Branch (NOB), a collaboration between the NIH and NCI, went over the great research and advances that are happening because of the uniqueness of the NOB.
  • Terri Armstrong, PhD, Senior Investigator of NOB, talked about neuro-oncology research currently underway, specifically, patient-focused outcomes, and encouraged the support of advocates.
  • Corie & Michael Yutkin, California Advocates; Sandy & Richard Perkins, Arizona Advocates; and Matt Hanson, WA State Lead Advocate; discussed Head to the Hill from an advocates perspective
  • Jason Herbert, Legislative Director, Rep. Dan Newhouse (R-WA4), discussed what congressional offices need to hear from advocates.
  • Danielle Leach, Senior Director of Government Relations and Advocacy, St. Baldrick’s Foundation & Co-chair, Alliance for Childhood Cancer spoke on the particulars of the STAR Act
Richard and Sandy Perkins – AZ

The advocates, working with teams from their home state, had time to practice tying their personal experiences to the needs of the greater brain tumor community and roleplay in preparation for their next day’s meetings.

At the end of our training day, we made our way to the annual butterfly release ceremony to commemorate Ependymoma Awareness Day with our partners from the Collaborative Ependymoma Research Network (CERN).

Our evening was spent memorizing facts, honing our personal stories, and resting up for the large day ahead of us.

When I learned about Head to the Hill I jumped on the chance to be a voice for those who can’t be a voice for themselves. Walking into the room on Monday was like walking into Freedom Plaza all over again: scars were shared like road maps of journeys we had taken; our loved ones were talked about as they have been our champions; and tears were shed as we shared triumphs and trials. Those kinds of moments let us know we aren’t alone, we aren’t going down without one heck of a fight, and I know I left feeling inspired and ready to take on the world.

What the NBTS did that day was way more than prepare us to go to Capitol Hill: you bonded a group of strangers. The people I now have the privilege to call friend and I left in tears. We actually likened it to the end of the Wizard of Oz when Dorothy says goodbye to the lion, tin man, and scarecrow. Over the course of those two days, the NBTS showed us the courage of the Lion, the love felt in the heart of the Tin Man, and the brains of the Scarecrow to put it all together.

Attribution: NBTS Advocate


From the moment we arrived for our annual group photo on Capitol Hill, time was of the essence. From 9:30AM until the late afternoon, advocates visited hundreds of offices, passionately speaking with staffers and elected officials and requesting their support of our legislative asks.

Largely, the feedback we received from our advocates were positive, complete with stories of engaged staffers and senators listening carefully to their stories and calls for support. This scale of advocacy is needed to make the impact we need to protect and improve the lives of brain tumor patients, and to find new treatments for our disease.

In fact, since our visit eight (8) new co-sponsors have joined the STAR Act in the House of Representatives and four (4) in the Senate!

We are overwhelmingly grateful for the hundreds of advocates that made it to Hill in person, and for all you who made the calls, tweets, and communications to your own representatives and senators, both last Tuesday, and in the future. We hope that you continue to be a part of our team throughout this month and all year long.

I’m on the train heading to the airport and I noticed that I’ve been smiling for the last hour. In fact, I’ve been smiling for two days. I’m proud of the work we did,
happy that we made headway, but most of all honored that I had a chance to be a part of the NBTS family.

Attribution: NBTS Advocate

We are most effective when we unify. Our voices will be heard.

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